Living with a condition often described as “the most painful known to medicine,” Gerwyn Tumelty, a 52-year-old father from Pontarddulais, Swansea, shares his harrowing experience with trigeminal neuralgia. This rare disorder can turn everyday activities into sources of excruciating pain, where even a gust of wind or a bite of food can trigger debilitating attacks.
For Tumelty, the pain felt like “a screwdriver in the side of his face,” leading him to contemplate the unthinkable. His three children became accustomed to seeing their father abruptly leave the dinner table, overwhelmed by sharp, electric-like pains. The condition, often misdiagnosed as toothache, occurs when a blood vessel compresses the trigeminal nerve, which transmits sensations from the face to the brain.
Challenges of Diagnosis and Treatment
The road to diagnosis can be lengthy and frustrating. Aneeta Prem, another sufferer of trigeminal neuralgia, experienced a seven-year struggle before receiving proper treatment. Despite describing her pain as “lightning going through my face,” she was initially told by medical professionals that nothing was wrong.
Tumelty’s journey began in 2017, when he first faced the formidable challenge of this condition. He describes the mental toll it took on him, stating, “What kept me going was that I couldn’t imagine what effect that would have on my family.” Attacks can last from a few seconds to several minutes and, in severe cases, can occur hundreds of times a day.
Treatment often involves a surgical procedure to relieve pressure on the trigeminal nerve, which carries risks such as facial numbness and hearing loss. Although Tumelty underwent this surgery, he found that while it alleviated his physical pain, the impact on his mental health lingered. He admitted to feeling “really low and lonely” and emphasized the importance of discussing mental health with friends and family.
The Importance of Support and Awareness
The Trigeminal Neuralgia Association plays a vital role in supporting individuals affected by this debilitating condition. The charity reports that many patients experience severe emotional distress, with over 33% contemplating suicide at some point. Despite these alarming statistics, more than 80% of those suffering have never sought help.
Prem advocates for early diagnosis and support, especially within general practice and dental surgeries. She notes that Wales has established a successful system involving a multi-disciplinary team adept at diagnosing the condition. Once diagnosed, patients can be fast-tracked to receive appropriate care.
As Tumelty continues to navigate life with trigeminal neuralgia, he has turned to physical challenges to bolster his mental health. He has completed the London Marathon and plans to trek in the Atlas Mountains. Additionally, he engages in daily routines that push his limits, such as taking ice baths, helping him face each day with renewed determination.
Both Tumelty and Prem’s stories highlight the necessity of awareness and understanding surrounding trigeminal neuralgia. They emphasize that while the physical symptoms are debilitating, the emotional support and recognition of the condition are equally crucial. The Trigeminal Neuralgia Association holds meetings in Wales, providing a platform for patients to share their experiences and find solidarity.
For those seeking more information or support, the association can be contacted at [email protected].
